Crikey.com.au, 6 April 2018:
DNA DEBATE
The federal government’s
controversial My Health Record program is capable of storing genomic data, such
as cancer risks, using technology that both has huge research applications and
highlights privacy and security concerns.
The Sydney Morning Herald reports that
genome-sequencing company Genome.One, which can track genetic variations and
therefore disease risks, has built “necessary infrastructure” for uploading
sensitive genomic data into the opt-out system.
University of Canberra privacy expert Bruce
Arnold has criticised the inherent risks of DNA-tracking technology and,
just a week after the government backdown on police access to My Health Records, today’s news as
again demonstrating a lack public consultation.
The Australian Digital Health Agency (ADHA) which is responsibe for My Health Record gave Genome.One, a wholly-owned subsidiary of The Garvan Institute, $40,000 in September 2017 to support the development of this software.
Its GoExplore™ software provides sequencing and analyses of patients’ DNA samples to assesses their risk of developing 52 hereditary conditions, including 31 cancers, 13 heart conditions, as well several other conditions where monitoring or intervention can be of benefit.
In a change of focus, Genome.One and The Garvan Institute are reportedly no longer offering clinical reporting for genetic disease diagnosis or personal health genomics in Australia. This service was priced at $6,400 plus GST, with no Medicare rebate.
Staffing numbers in Genome.One have been severely cut, new capital is being sought and, Gavan has
stated that it intends to spin off Genome.One
software into a new company in which it will be a minority shareholder.
However, Genome.One still intends to pilot its genomics technology integrated into GP practice software and on !8 April 2018 its CEO stated; “We're working with some electronic medical record providers and we're hoping that we can get a trial underway at some point this year”.
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